Rare Dis Clin Res Consortia (RDCRC) for Rare Dis Clin Res Network (U54)

罕见疾病临床研究联盟 (RDCRC) 的罕见疾病临床研究网络 (U54)

基本信息

批准号：
9145794
负责人：
MICHIO HIRANO
金额：
$ 24.6万
依托单位：
COLUMBIA UNIVERSITY HEALTH SCIENCES
依托单位国家：
美国
项目类别：
财政年份：
2014
资助国家：
美国
起止时间：
2014-09-01 至 2019-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9145794
关键词：
Administrator Advisory Committees Advocate Agreement American Biometry Clinical Clinical Research Collaborations Communication Communities Conflict (Psychology)Conflict of Interest Discipline Educational process of instructing Environment Faculty Family Foundations Funding Goals Grant Health Personnel Individual Instruction Internal Medicine Laboratories Leadership Medical Genetics Medicine Mission Mitochondrial Diseases Nature Neurology North America Participant Pathology Patients Pediatric Neurology Physicians Principal Investigator Rare Diseases Reporting Research Research Personnel Research Training Resolution Resource Sharing Resources Scientist Services Site Site Visit Training Translational Research United States National Institutes of Health Universities Work base interest meetings member multidisciplinary operation patient advocacy group programs success training opportunity web site

项目摘要

The Administrative Core of the North American Mitochondrial Disease Consortium (NAMDC) will provide critical organizational and strategic support to assure the overall success of the Center in accordance with NIH Rare Disease Clinical Research Network (RDCRN) programmatic objectives. The Core will have a Principal Investigator, Administrative Director, and Statistical Director with ultimate responsibility for the Center's scientific, clinical research and training/educational operations. These individuals plus three other NAMDC investigators will form an Executive Committee that meets regularly to assess and evaluate the program and its operations. An External Advisory Committee composed of researchers, clinicians and patient advocates will advise the Center's leadership and Executive Committee. The specific aims of the Core are 1) to provide broad-based administrative support to NAMDC, 2) work with the External Advisory Committee to assure that NAMDC operates to benefit the mitochondrial disease research and patient communities, 3) manage the internal and external communications of NAMDC, and 4) promote collaboration with investigators outside of NAMDC and assure sharing of resources. Other specific functions include fiscal management, administration of subcontract/consortium agreements, communication with NIH Program staff and the RDCRN Steering Committee, resolution of unlikely conflicts/conflicts of interest and facilitating interactions with patient advocacy groups including the United Mitochondrial Disease Foundation (UMDF). The Core will also maintain an internal website to manage internal documents and communications with NAMDC sites as well as an external website to publically communicate NAMDC's mission and the availability of training opportunities and core services.

北美线粒体疾病联盟 (NAMDC) 的管理核心将提供关键的组织和战略支持，以确保中心按照 NIH 罕见病临床研究网络 (RDCRN) 规划目标。核心将有一个首席研究员、行政主任和统计主任，对研究负有最终责任中心的科学、临床研究和培训/教育运作。这些人加上另外三人 NAMDC 调查人员将组建一个执行委员会，定期举行会议以评估和评估程序及其操作。由研究人员、临床医生和专家组成的外部咨询委员会患者权益倡导者将为中心领导层和执行委员会提供建议。该计划的具体目标核心是 1) 为 NAMDC 提供基础广泛的行政支持，2) 与外部顾问合作委员会确保 NAMDC 的运作有利于线粒体疾病研究和患者社区，3) 管理 NAMDC 的内部和外部沟通，以及 4) 促进协作与 NAMDC 以外的研究人员合作，并确保资源共享。其他具体职能包括财政管理、分包/联合体协议的管理、与 NIH 项目工作人员的沟通和 RDCRN 指导委员会，解决不太可能发生的冲突/利益冲突并促进与患者权益团体（包括联合线粒体疾病基金会 (UMDF)）的互动。核心还将维护一个内部网站，以管理内部文件和与 NAMDC 网站以及外部网站，用于公开传达 NAMDC 的使命和可用性培训机会和核心服务。